Transcript Slide 1

A fair access system for
patients and their families
John McCormack
Chief Executive Officer, Irish Cancer Society
1
Some critical dilemmas
What would you pay
to save your life?
What should
figure should be
attached to
health?
What would you pay
to extend your life?
What about if
you are over 65?
Over 70? Over
80? Is life valued
less then?
Who should make
these decisions?
Cancer in Ireland
HTD Scheme
€20m in 1997
to €360m in
2010
Backdrop to rising costs
Government funding to HSE 2008 - 2011
Is saying there’s no money an adequate
reason to deny a person access to a
treatment that will save or improve their
life?
The Price of Life
Who is the treatment for?
Only patients and their
caregivers know
precisely how a disease
impacts on daily life and
how specific treatments
or management
strategies can influence
their quality of life
So why is there no
formal patient role with
the NCPE?
Where is the patient?
Pharma company
HSE - CPU
NCCP
Technology
Review Group
NCPE
NCCP recommendation
HTA
HTA bodies
involve
diverse array
of
stakeholders
Limited
role for
patients
in process
NICE has
established
a “Citizens’
Council”
Greater stakeholder involvement can facilitate better overall assessment, lend
to greater transparency, reduce appeals, and result in improved
implementation of recommendations and guidance
Patient perspective
The HTA process is
complex,
confusing and
excludes the
primary
stakeholders
Patients lack
capacity and
knowledge of HTA
process
Confusion has led
to patients’
reactive response
through media
and political
channels
NOT GOOD FOR
ANYONE
Involving patients
Concern that
negative
comments
might impact
access to a
treatment
They don’t know
about the HTA
process
Emotional
response
rather than
factual
They
don’t
know:
Need to represent
a range of
experiences and
perspectives
Working with
bureaucratic processes
may be difficult
‘Experts’
can be
intimidating
– what is evidence
– how to gather evidence
– how to interpret it
– how to present it
Our recommendations
Permanent
rep on NCPE
Develop
formal policy
on patient
involvement
Don’t dismiss
patients
Fair access
to treatment
Impact of Ippy
Highlighted Manipulation Uncertainty
that process of patients for patients
can be
for drug
in future
undermined
approval
assessments
The future
Continued
access to
innovative
medicines
vital
Voluntary
We want the
Role of the organisations system to
are investing work – but it
patient
could be key
in health
needs to
economics work better